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Global CampaignAgainst Epilepsyout of the shadows
International Bureau for Epilepsy
World HealthOrganization
International League Against Epilepsy
The Campaign at a glance
A Global Campaign Against Epilepsy is much needed – the burden of epilepsy
is underestimated and the means available to reduce it are underutilized. The
problem is too complex to be solved by individual organizations.The three
leading international organizations working in epilepsy have therefore joined
forces to bring epilepsy “out of the shadows”. The Campaign will assist gov-
ernments worldwide to make sure that diagnosis, treatment, prevention and
social acceptability of epilepsy are improved.
The Campaign strategy
Working along two parallel tracks, the Campaign will:
❚ raise general awareness and understanding of epilepsy;
❚ support Departments of Health in identifying needs and promoting educa-
tion, training, treatment, services, research and prevention in their countries.
The Campaign tactics
❚ To generate Regional Declarations on Epilepsy, produce information on
epilepsy for policy-makers, incorporate epilepsy care into National Health
Plans, and facilitate the establishment of national organizations of profession-
als and lay persons who are dedicated to promoting the well-being of people
with epilepsy.
❚ To help organize Demonstration Projects that illustrate good
practice in the provision of epilepsy care.
The Global Campaign is managed by a Secretariat consisting of representatives of thethree responsible organizations:
World Health Organization (WHO)International League Against Epilepsy (ILAE) professionalsInternational Bureau for Epilepsy, (IBE) lay persons
2 Global Campaign Against Epilepsy
Why have a Global Campaign against Epilepsy? page 4
Facts about epilepsy
What is the Global Campaign? page 6
Campaign strategy and tactics
Management of the Campaign
The Campaign structure and activities
General activities of the Global Campaign page 9
Collaboration to increase awareness about epilepsy
Regional conferences and declarations
Regional reports and country resources
National activities
Technical consultative meetings
Specific activities of the Global Campaign page 12
Components of the two phases in the Demonstration Projects
Demonstration Projects
Outline of the management structure of a Demonstration Project
Step 1. Educational and social intervention
Step 2. Epidemiological Assessment and case-finding
Step 3. Service delivery and intervention
Step 4. Outcome measurement
The ultimate goal page 21
Contents
Appendix 1. Some facts about epilepsy page 22
What is epilepsy?
Prevalence and incidence of epilepsy
Treatments for epilepsy
The burden of epilepsy
References page 25
Information and contact addresses page 26
Global Campaign Against Epilepsy 3
Facts about epilepsy
Epilepsy is a chronic noncommunica-
ble disorder of the brain. It occurs all
over the world. In all areas, no less
than three out of every thousand
people – and in several places over 40
per thousand (4%) – are affected 2.
Every year, among every 100 000
persons there will be 40 – 70 new
cases 3.
The symptoms of epilepsy are the
seizures that occur at unpredictable
moments. These may vary from fre-
quent brief lapses of consciousness to
short periods of automatic subcon-
scious behaviour or convulsions of the
whole body that make the person fall
over and lose consciousness com-
pletely. Intervals between seizures or
clusters of seizures may vary from less
than an hour to one or two years.
Even in the latter case, the conse-
quences of having the disorder affect
a person's every-day life.
From the first written record in 4000
BC until the present day, myths and
superstitions have been associated
with epilepsy. This is one of the rea-
sons that, in many parts of the world,
living conditions for people with
4 Global Campaign Against Epilepsy
A Global Campaign Against Epilepsy
is necessary because the burden of
epilepsy on individuals and communi-
ties is far greater than previously real-
ized. The problem is too complex to
be solved by individual organizations.
The three leading international orga-
nizations working in epilepsy have
therefore joined forces to bring
epilepsy “out of the shadows”.
The Campaign is conducted by the
World Health Organization (WHO) in
partnership with the International
League Against Epilepsy (ILAE) and
the International Bureau for Epilepsy
(IBE). The aims of the Campaign are
to provide better information about
epilepsy and its consequences and to
assist governments and those con-
cerned with epilepsy to reduce the
burden of the disorder.
Why have a Global Campaign Against Epilepsy?
Global Campaign Against Epilepsy 5
epilepsy are far worse than might be
expected, given the state of knowl-
edge about epilepsy and the means
available to stop seizures and restore
complete participation in society. In
addition, as long as a person is likely
to have seizures, the family and close
friends also suffer the burden of this
disorder.
There is sufficient evidence available
to show that 70 – 80% of people
with epilepsy could lead normal lives
if properly treated4. Unfortunately,
there is also evidence that in many
countries more than 50% of people
with epilepsy (and in certain areas up
to 90%) are not properly treated1.
Part of this treatment gap* is attribut-
able to insufficient recognition that
the symptoms of which these people
complain are caused by epilepsy.
(More information about epilepsy is
given in Appendix 1)
*The difference between the number of people with active epilepsy and the numberwhose seizures are being appropriately treated in a given population at a given point intime, expressed as a percentage
In order to assist Departments of
Health which are looking for tools
applicable in their country to realize
the objectives of the Campaign,
Demonstration Projects are organized
in a number of countries in different
regions. These Demonstration Projects
offer models of how to identify
needs; how to educate and train staff
involved in diagnosis, treatment, ser-
vices, prevention and research; and
how to promote education of the
general public.
6 Global Campaign Against Epilepsy
Campaign strategy and tactics
The mission statement of the
Campaign is: “To improve acceptabil-
ity, treatment, services and preven-
tion of epilepsy worldwide”.
Major goals are to ensure that epilep-
sy care is incorporated into National
Health Plans and to facilitate the exis-
tence in every country of organiza-
tions of professionals and lay people
who are dedicated to promoting the
well-being of people with epilepsy.
In order to increase awareness of the
problems caused by epilepsy and the
means available to deal with them,
conferences have been organized
between key persons in health care
administration and government and
experts in the field of epilepsy. These
conferences were held in the six
WHO regions (Africa, the Americas,
the Eastern Mediterranean, Europe,
South-East Asia, and the Western
Pacific) and have resulted in Regional
Declarations on Epilepsy5, White
Papers6 and regional reports.
What is the Global Campaign?
Secretariat is accountable to an
Advisory Board composed of two rep-
resentatives of each of the three bod-
ies. Both the Secretariat and the
Advisory Board members are account-
able to their respective organizations.
WHO works through its regional
offices and country representatives.
IBE and ILAE work through their
regional commissions, their resource-
oriented and problem-oriented com-
missions, and their national member
organizations.
The Campaign structure and activities
are outlined in Figure 1 on page 8.
Global Campaign Against Epilepsy 7
Management of theCampaign
Three organizations collaborate in the
Global Campaign Against Epilepsy:
WHO (specialized agency of the
United Nations, with 192 Member
States), ILAE (with member organiza-
tions in more than 80 countries) and
IBE (with member organizations in
more than 60 countries). ILAE mem-
ber organizations consist of profes-
sionals concerned with medical and
scientific aspects of epilepsy, while
those of IBE are concerned with social
aspects and the quality of life of peo-
ple with epilepsy.
In June 1997, these three partners
launched the Global Campaign
Against Epilepsy simultaneously from
Geneva, Switzerland, and Dublin,
Ireland, during the 22nd World
Congress on Epilepsy. A Secretariat
was established consisting of a repre-
sentative from each of the three orga-
nizations, which oversees the day-to-
day running of the Campaign. The
8 Global Campaign Against Epilepsy
Global Campaign against Epilepsy
Medical and scientificprofessionals
MemberStates
Patients, families,non-medical professionals
How? What? Where?What?
AdvisoryBoard
Assistinggovernments to build nationalepilepsyprogrammes
Awareness-raising
Global events
Secretariat
Conferencesfor regionalexperts
Educational and social interventionEpidemiological assessmentService delivery and interventionOutcomemeasurement
Declarations,Regional reports
Regional events
National activities
Assessment of countryresources for epilepsy
(1 representativeof IBE, ILAE and WHO)
Officers with specialresponsi-bilities
Demonstra-tion Projects
(Scientific Project Leader, Regional Facilitators, National or Regional Officers, etc.)
(representativesof IBE, ILAE and WHO)
Figure 1: The Campaign structure and activities
Global Campaign Against Epilepsy 9
General activities of the Global Campaign
Regional conferences and declarations
As part of general awareness-raising,
regional conferences on public health
aspects of epilepsy were organized in
the six WHO regions (Africa, the
Americas, Eastern Mediterranean,
Europe, South-East Asia, and the
Western Pacific).
At these regional conferences, dele-
gates of epilepsy organizations of
national and international lay persons
(IBE) and professionals (ILAE) met
with public health experts from gov-
ernments and universities and repre-
sentatives from WHO headquarters
and regions. As the result of intensive
discussion and examination of data
presented by delegates, a Regional
Declaration on Epilepsy was adopted
after each conference, summarizing
perceived needs and proposing
actions to be taken. These declara-
tions call on governments and all
health care providers to join in taking
strong and decisive action to meet
the objectives of the Global
Campaign Against Epilepsy.
Collaboration to increaseawareness about epilepsy
Since WHO Cabinet approval in
December 1999, collaboration with
and support for the Campaign have
been strengthened through the
involvement of the Regional Offices
of WHO 7. Regular contacts are main-
tained with various interested clusters
and departments within WHO.
Support has been provided by the
Global Health Forum for Health
Research for a review of the evidence
base for priority setting in epilepsy
research. Furthermore, the applicabili-
ty to epilepsy of the common format
for priority setting was determined 8.
A number of IBE/ILAE Commissions
are engaged in various developmental
activities for the Campaign, for exam-
ple, regarding a definition of the
treatment gap and outcome measures
for the Demonstration Projects.
Regional reports and country resources
A questionnaire on country resources
has been developed by a group of
experts, in order to map the resources
for epilepsy worldwide. All IBE and
ILAE member organizations and all
WHO Member States have been
invited to complete the questionnaire.
Reports on the implementation of the
GCAE are being prepared in a number
of WHO regions, which will include
the data collected through the ques-
tionnaires. These documents are
intended to be tools for advocacy and
instruments for dialogue with govern-
ments, health care providers, donors
and other partners. These reports are
working papers and provide basic
knowledge on epilepsy and basic facts
about the epidemiological burden, as
well as propose the next steps to be
taken.
10 Global Campaign Against Epilepsy
Following the European Conference,
the WHO Regional Office for Europe,
together with all European member
organizations of IBE and ILAE, strong-
ly supported by WHO headquarters,
agreed to submit the European
Declaration on Epilepsy with an
accompanying White Paper to the
European Parliament and European
Governments6. This event took place
in March 2001 and was followed
eight months later by the establish-
ment of a group of Parliamentary
Advocates for Epilepsy, whose role is
to place epilepsy on the health agen-
da of the European Union.
In other regions, the follow-up of the
regional declarations will be tailored
according to prevailing conditions.
❚ to review the implementation of the
GCAE in the region, including the
progress of Demonstration Projects;
❚ to develop a framework of action
for countries.
The meetings brought together clini-
cians with expertise in the field of
epilepsy, leaders of the Global
Campaign Against Epilepsy, and
senior staff from WHO 9. In addition,
a number of technical consultative
meetings were organized at WHO
headquarters on the progress and
prospects of the Campaign, at which,
for example, it was agreed that
epilepsy interventions should be sus-
tainable and provide long-term care
and that the outcomes should be
measured 10.
Global Campaign Against Epilepsy 11
National activities
On a national level, the elements of
the Global Campaign are adapted by
the national member organizations to
the needs specific to each country.
The national organizations strive to
implement the strategy of the
Campaign through active engage-
ment with their governments and
local WHO offices. They also partici-
pate in planning the Campaign at an
international level.
Technical consultative meetings
Technical consultative meetings were
organized in a number of WHO
regions by WHO Regional Offices in
collaboration with the Campaign
Secretariat. The main objectives were:
❚ to review the present state of
epilepsy in the regions;
❚ to discuss regional reports on epilepsy;
The Demonstration Projects will illus-
trate good practice in providing ser-
vices to people with epilepsy and will
be used as models of what can be
achieved. When proven to be effec-
tive, similar projects will be implement-
ed in the whole of the country in
which they are situated, in neighbour-
ing countries and, finally, globally.
Demonstration Projects start in a rep-
resentative region of limited size. This
is the research phase: the aim is to
investigate the impact of local condi-
tions on general strategies to improve
epilepsy care. Results of the research
phase are used by National Health
Authorities to plan and implement ser-
vices and awareness-raising about
epilepsy all over the country. Results
of the subsequent implementation
phase are assessed in order to develop
a National Programme on Epilepsy.
The components of these two phases
are shown in the Figure 2 on page 13.
Specific activities of the Global Campaign
12 Global Campaign Against Epilepsy
In April 1999, representatives of the
three partners in the Campaign met
in Geneva with epilepsy experts from
industrialized and developing coun-
tries, to discuss the development and
implementation of Demonstration
Projects10, which the Campaign
encourages to be set up in a number
of selected countries in different
regions.
The counterparts of these projects at
a country level will be the member
organizations of IBE and ILAE, work-
ing in close collaboration with WHO
country representatives. These local
counterparts will be involved in rais-
ing awareness of the needs of people
with epilepsy, as well as encouraging
and supporting the provision of good
treatment and services.
Global Campaign Against Epilepsy 13
Demonstration Project: Research Phase(in selected country regions)
Analysis of outcome and recommendations
Demonstration Project: Implementation Phase(on a national level)
Service delivery and intervention
Assessment of knowledge and attitudes followed by education
Epidemiological assessment
Service delivery including social and educational intervention
Educational and social intervention
Development of a National Programme on Epilepsy
Figure 2: Components of the two phases in the Demonstration Projects
Management structure ofDemonstration Projects
The Global Campaign partners coor-
dinate the projects, working closely
with the national IBE and ILAE mem-
ber organizations, other nongovern-
mental organizations on neurology
and neuroscience, WHO Regional
Offices and country offices and local
ministries.
The Demonstration Projects are the
responsibility of the Campaign’s
Secretariat, which oversees the day-
to-day running of the Campaign,
providing governments and other
partners with sufficient, clear infor-
mation and ensuring adequate fund-
ing. External funds will be used to ini-
tiate Demonstration Projects; howev-
er, such funds will not be used to pay
for services or drugs, because the
provision of anything except minimal
outside funding for these compo-
nents would be likely to indicate that
the project could not be locally sus-
tainable.
14 Global Campaign Against Epilepsy
Demonstration Projects
Selection of location
Criteria for country selection are:
❚ the likelihood that results of the
Demonstration Project can be uti-
lized by other countries;
❚ availability of political and personal
contacts;
❚ willingness to participate;
❚ availability of a WHO collaborative
centre or country representative;
❚ presence of an IBE and an ILAE
member organization, or groups
that have the potential to form a
member organization;
❚ a regular supply of basic antiepilep-
tic drugs (AEDs);
❚ facility of communications.
monitoring the projects to see how
they are performing, and for writing
up this performance for scientific jour-
nals.
Principal Investigators have responsi-
bility for the Demonstration Project in
the country where it is held. They are
responsible for constructing the pro-
ject’s protocol according to the guide-
lines of the Scientific Project Leader
and local circumstances. Principal
Investigators ensure that the protocol
implementation keeps to its budget
and timescales. The Principal
Investigators are the focal points of
the Campaign’s relationship with the
project and the people through whom
information will flow. Ensuring that
the project meets its outcome mea-
sures is central to their work.
Global Campaign Against Epilepsy 15
Scientific supervision of the projects is
delegated to a Scientific Project
Leader, who liaises directly with local
Principal Investigators and Regional
Facilitators in to set up and monitor
the projects. The Scientific Project
Leader also liaises with local ILAE and
IBE member organizations in order to
foster local ownership and community
participation and with the relevant
WHO offices and Departments of
Health.
The Scientific Project Leader is
responsible for helping to design and
evaluate the project protocols. An
important aspect of the evaluation is
ensuring that each Demonstration
Project has sustainability built into its
design and that outcomes are mea-
surable. They are also responsible for
Representatives of WHORegional Offices and Country Offices
Ministries of Health
Secretariat of GCAE(one representative of IBE, ILAE and WHO)
Scientific Project Leader
Regional Facilitators
PrincipalInvestigators
Figure 3: Outline of the management structure of a Demonstration project
❚ ensuring that people with epilepsy
are properly served by health per-
sonnel equipped for their task
(Service delivery and intervention);
❚ analysing the outcome and prepar-
ing recommendations for those who
wish to apply the findings to the
improvement of epilepsy care in
their own and in other countries
(Outcome measurement).
16 Global Campaign Against Epilepsy
Regional Facilitators, working in close
relationship with the relevant WHO
Regional Advisers, will support the
Principal Investigators in the imple-
mentation of their projects.
An outline of the management struc-
ture of the Demonstration Projects is
given in Figure 3 on page 15.
Design and activities of theDemonstration Project
In general terms, each Demonstration
Project has four aspects:
❚ assessing whether knowledge and
attitudes of the population are ade-
quate, correcting misinformation and
increasing awareness of epilepsy and
how it can be treated (Educational
and social intervention);
❚ assessing the number of people with
epilepsy and estimating how many
of them are appropriately treated
(Epidemiological assessment and
case-finding);
as teachers at local primary and sec-
ondary schools.
❚ People will be informed about
epilepsy through:
–public address systems and the
media;
–distribution of materials on
epilepsy;
–posters.
❚ People will be informed about inter-
national and national professional
and lay organizations concerned
with epilepsy.
Global Campaign Against Epilepsy 17
Step 1. Educational and socialintervention
Incorrect perceptions about epilepsy
are often the reason why people with
epilepsy are stigmatized; this can be
an incentive to hide the fact of having
epilepsy. Symptoms from which cer-
tain persons suffer may not be recog-
nized as a sign of epilepsy, which is a
disorder for which medication is avail-
able. Both these factors are a source
of underestimation when assessing
the prevalence of epilepsy.
The educational and social interven-
tion will prepare the population for
the epidemiological study but will also
promote a change of attitude in the
community, through the following
activities.
❚ A representative sample of the pop-
ulation in the area will be surveyed
to assess public awareness and
understanding of epilepsy and atti-
tudes towards people who suffer
from the condition.
❚ An educational programme to
decrease social stigma, improve
social relations and leisure activities,
and open up realistic job opportuni-
ties will be targeted on groups of
key people in the communities, such
❚ Participation in the professional
epilepsy society and support of the
lay association are encouraged.
❚ A door-to-door survey is carried out
in a representative part of the area:
– a screening questionnaire is
applied, designed to identify
cases of epilepsy with convulsive
seizures;
– a village doctor then applies a
diagnostic questionnaire to those
patients preliminarily identified
as possible cases of epilepsy with
generalized tonic clonic seizures,
with or without occurrence of
other seizure types;
– senior primary health care physi-
cians then confirm the diagnosis;
if there are doubts, local neurol-
ogists will be responsible for a
final decision.
18 Global Campaign Against Epilepsy
Step 2. Epidemiological assessment andcase-finding
Correctly identifying people with
epilepsy is crucial to establishing the
extent of a country’s treatment gap
and to ensuring that appropriate
treatment is offered to those who
need it. It is essential that staff
involved in a survey – and also health
personnel who care for patients with
hitherto unrecognized epilepsy – have
sufficient knowledge of epilepsy, so
that conflict is not created when
epilepsy is diagnosed in a survey
while the person is receiving treat-
ment for another, wrongly diagnosed
condition.
❚ At the onset of the Demonstration
Project, questionnaires to assess
knowledge, attitudes and practice
regarding epilepsy are distributed to
all health personnel in the study
area; the questionnaires are self-
administered.
❚ All physicians and a number of the
primary health care personnel (vil-
lage doctors) receive basic epilepsy
training to correct deficiencies that
were revealed by the questionnaires.
❚ All people who follow the protocol
will be assessed separately. For each
patient included in the study, a stan-
dard entry form and a follow-up
form will be prepared. The protocol
is based upon:
– treatment with available first-line
drugs;
–provision of education that facili-
tates compliance with treatment
and, if necessary, adaptation of
lifestyle;
– if seizures persist, referral to a
local neurologist for reassess-
ment and prescription of
antiepileptic medication accord-
ing to the findings.
❚ The staff involved in the
Demonstration Project will receive:
–a treatment protocol;
– a chart to assist physicians in
dealing with side-effects;
–written instructions on evalua-
tion and how to boost compli-
ance.
Global Campaign Against Epilepsy 19
Step 3. Service delivery and intervention
This stage covers quality of diagnosis,
treatment, follow-up and referral net-
works. In order to provide appropriate
treatment, activities that ensure the
supply of antiepileptic drugs and facil-
itate their use in treatment are neces-
sary and will be put in place if not
available.
❚ People with epilepsy who are under
the care of the team involved in the
Demonstration Project will be
offered the possibility of participa-
tion in the study. If their epilepsy is
not active, their previous treatment
will be continued; if they still have
seizures, their treatment will be
adjusted according to the treatment
protocol of the Demonstration
Project. People who are diagnosed
with epilepsy and are not receiving
regular treatment will be offered
treatment, provided they have had
at least two convulsive seizures in
the previous 12 months and if they
and/or their guardian are able and
willing to give informed consent.
Step 4. Outcome measurement
Whether the Demonstration Projects
are successful and provide suitable
approaches for other countries to
adopt will have to be confirmed by
evidence. Their success or otherwise
will be seen in terms of the decrease
of the treatment gap and its conse-
quences in the demonstration region.
In order to discern whether a project
is achieving the desired results, its
performance will be specifically mea-
sured by comparing the following
before onset and after completion of
project:
❚ the number of people with epilepsy
who received a correct diagnosis;
❚ the number of people successfully
treated;
❚ the social situation of people of vari-
ous age groups with epilepsy
❚ knowledge, attitudes and practice of
those interviewed at the onset.
20 Global Campaign Against Epilepsy
❚ Patients and their families will be
educated about:
– the nature of epilepsy and its
characteristics, causes and prog-
nosis;
– the nature and objectives of
treatment, the way to use the
drugs, possible side-effects and
how to deal with them, the
duration of treatment, and the
importance of compliance.
–general health measures, emer-
gency treatment of seizures, and
how to live with epilepsy.
❚ Patients and their families will be
encouraged to join the local epilepsy
organization for lay people.
Global Campaign Against Epilepsy 21
The ultimate goal
The ultimate goal of the Demonstration Projects is
the development of a successful model of epilepsy
control that will be integrated into the health care
systems of the participating countries and regions
and, finally, applied on a global level.
Furthermore it is hoped that the lessons learnt
from the Demonstration Projects will support the
development of preventative measure strategies
globally.
subtle absences body jerks or loss of
postural tone. Partial seizures may
progress to generalized seizures.
Epilepsy has many causes: in some
people the condition is inherited but
in most it is caused by brain damage
due to causes such as infections or
trauma, stroke, brain tumour or
development abnormalities. In many
individuals the cause is never known.
Some conditions can cause seizures
that only occur until the provocation
is removed: these are known as acute
symptomatic seizures, and are not
generally considered to be epilepsy.
The majority of people with epilepsy
can be seizure-free. Some of them
will need to continue with medication
for life but, for others, the antiepilep-
tic medication may eventually be
stopped without seizures recurring.
Prevalence and incidence of epilepsy
The prevalence of epilepsy is the num-
ber of people with epilepsy in the pop-
ulation at any one point in time, divid-
ed by the number of people in the
22 Global Campaign Against Epilepsy
What is epilepsy?
To understand what the Global
Campaign Against Epilepsy is about,
some basic facts should be known
about epilepsy. For detailed informa-
tion, the reader is referred to standard
textbooks (e.g.11).
Epilepsy is the name for a group of
brain disorders characterized by
seizures (the word epilepsy comes
from the Greek epilambanein, which
means to seize or attack). Epilepsy is
the most common serious neurologi-
cal disorder, and can affect anyone.
The seizures can occur at any time,
though in some people they may be
precipitated by other events. The
seizures occur when recurrent
episodes of brain dysfunction, with
synchronized discharge of brain cells,
lead to alterations in sensory, motor
or other activity. Some affect localized
parts of the brain and lead to partial
seizures, which may consist of subjec-
tive experiences or involuntary motor
activity, or both, with or without loss
of consciousness. Generalized seizures
can occur when both sides of the
brain are involved in the synchronous
discharges, and these can include
tonic clonic (grand mal) seizures or
Appendix 1. More facts about epilepsy
Epilepsy affects about 50 million peo-
ple throughout the world and is espe-
cially common in childhood and in
elderly people. Epilepsy affects not
only the individual, but also has con-
sequences for the family and the rest
of society. A minimum of 250 million
people will experience at least one
seizure in their lifetime and at least
2.4 million new cases of epilepsy
occur each year.
Treatments for epilepsy
In the majority of cases, epilepsy is
treated using antiepileptic drugs
(AEDs). Recent studies in both indus-
trialized and developing countries
have shown that up to 70% of newly
diagnosed cases of children and
adults with epilepsy can be success-
fully treated with AEDs4, so that they
are seizure-free provided they take
their medicines regularly. After several
years of seizure-freedom, medication
can be withdrawn in 60 – 70% of
people under medical supervision12.
Of the 30% who do not become
seizure-free with treatment, many will
have their seizures considerably
Global Campaign Against Epilepsy 23
same population at the same time.
The incidence of epilepsy is the num-
ber of people in a population who
develop epilepsy during a defined peri-
od. Despite epilepsy being so com-
mon, the reported figures vary widely.
The incidence is generally taken to be
between 40 and 70 per 100 000 peo-
ple per year in industrialized countries,
with estimates of 100 – 190 per 100
000 people per year in developing
countries. The prevalence is between
5 and 40 per 1000 persons 2.
The incidence and prevalence of
epilepsy may vary widely because of
their different causes. Parasitic, viral
and bacterial infections have been
suggested as important factors in the
cause of epilepsy in developing coun-
tries, also infections, brain damage
occurring at birth or in accidents, or
other brain trauma. Some of these fac-
tors may be reduced in developing
countries by improved prevention and
treatment. In the affluent countries,
reduction of strokes and brain tumours
may lessen the incidence of epilepsy.
Although it has a minor role, genetic
counselling can also help to prevent
certain types of epilepsy.
without warning in potentially dan-
gerous situations. The lack of control
over the seizures can be distressing,
as can be the effect on onlookers.
Social exclusion can occur because of
the negative attitude of others
towards people with epilepsy, which
can lead to isolation. In some soci-
eties, epilepsy is wrongly considered
to be infectious or caused by a super-
natural spirit. Children with epilepsy
may be banned from school, adults
may be barred from marriage, and
employment is often denied, even
when seizures would not render the
work unsuitable or unsafe.
It has been estimated that 10% of
the burden of brain and mental disor-
ders in the world is caused by epilep-
sy, calculated in disability-adjusted life
years (DALYs), which is very signifi-
cant. This calculation includes prema-
ture deaths and the loss of healthy
life due to disability13. However, it
does not include the effects of stigma
and social exclusion or their repercus-
sions on the family14.
24 Global Campaign Against Epilepsy
reduced. For some patients with
intractable epilepsy, neurosurgical
treatment may be successful.
A person is said to have active epilep-
sy when (with or without treatment)
he or she has had at least two
seizures in the previous 12 months.
Once a period of five years without
treatment or seizures has elapsed, a
person is no longer considered to
have epilepsy.
To cope with the psychological effects
of having epilepsy and its conse-
quences on quality of life, psychologi-
cal and social interventions or support
are often needed by people who have
this disorder.
The burden of epilepsy
The impact of epilepsy on an individ-
ual is a combination of physical con-
sequences of the seizures, the effect
on the social position, and the psy-
chological outcome of both of these.
Furthermore, not only the person
with epilepsy but also the family and
indirectly the community are affected.
The physical hazards of epilepsy are
frequently due to the unpredictability
of the seizures, which may occur
9. Annual report of the ILAE/IBE/WHO
Global Campaign Against Epilepsy
2001. Heemstede, The Netherlands
2001.
10. Consultative meeting on epilepsy pro-
ject. Geneva, World Health
Organization, 1999 (document
WHO/MNH/NND/99.3).
11. Engel J Jr, Pedley TA. Epilepsy, a com-
prehensive textbook. Philadelphia, PA,
Lippincott-Raven, 1998.
12. Berg AT, Shinnar S, Chadwick D.
Discontinuing antiepileptic drugs.
Chapter 115 in Engel J Jr, Pedley TA.
Epilepsy, a comprehensive textbook.
Philadelphia, PA, Lippincott-Raven,
1998.
13. World development report 1993:
Investing in health. New York, Oxford
University Press for The World Bank,
1993.
14. The world health report 2001 –
Mental health: new understanding,
new hope. Geneva, World Health
Organization, 2001.
Global Campaign Against Epilepsy 25
1. Meinardi H, et al. The treatment gap in
epilepsy. Epilepsia, 2001, 42:136 – 149.
2. Secretariat of ILAE/IBE/WHO Global
Campaign Against Epilepsy. Epilepsy, a
manual for medical and clinical officers
in Africa. Geneva, World Health
Organization 2002
(WHO/MSD/MBD/02.02)
3. Hauser WA, Hesdorffer DC. Epilepsy:
frequency, causes and consequences.
New York, Demos, 1990.
4. Sander JWAS, Sillanpää M. Natural his-
tory and prognosis. Chapter 7, in Engel
J Jr, Pedley TA. Epilepsy, a comprehen-
sive textbook. Philadelphia, PA,
Lippincott-Raven, 1998.
5. Annual report of the ILAE/IBE/WHO
Global Campaign Against Epilepsy
2000. Heemstede, The Netherlands,
2000.
6. European White Paper on epilepsy.
Brussels, Eucare, 2001.
7. Paper to Cabinet: Executive Director,
Social Change and Mental Health, 3
December 1999. In: Annual report of
the ILAE/IBE/WHO Global Campaign
Against Epilepsy 2001. Geneva, World
Health Organization, 2001
8. Consultation on priority setting in the
field of epilepsy research. Geneva,
World Health Organization, 2001 (doc-
ument WHO/MSD/MBD/01.1).
References
International League against Epilepsy
(ILAE)
Key contact: Jerome Engel jr.
Reed Neurological Research Center
UCLA School of Medicine
710 Westwood Plaza
Los Angeles, CA 90095-1769, USA
tel: + 1 310 825 5745
fax: + 1 310 206 8461
email: [email protected]
World Health Organization (WHO)
Key Contact: Dr Leonid L. Prilipko
Department of Mental Health and
Substance Dependence
20 Avenue Appia
1211 Geneva 27
Switzerland
tel: + 41 22 791 3621
fax: + 41 22 791 4160
email: [email protected]
26 Global Campaign Against Epilepsy
Anyone interested in following the
progress of the Global Campaign and
its Demonstration Projects will be able
to do so from the regular updates on
the relevant web sites:
who.int/mental_health/main.cfm?s=0009
www.ibe-epilepsy.org
www.ilae-epilepsy.org).
Further information on the Global
Campaign Against Epilepsy and how
to help achieve the goals of the cam-
paign in countries can be obtained
from the addresses shown below.
International Bureau for Epilepsy (IBE)
Key Contact: Hanneke M. de Boer
Stichting Epilepsie Instellingen
Nederland
Achterweg 5
2103 SW Heemstede
The Netherlands
tel: + 31 23 5 237 418
fax: + 31 23 5 470 119
email: [email protected]
Information and contact adresses
Global Campaign Against Epilepsy 27
WHO Regional Office for Europe
8 Scherfigswej
2100 Copenhagen Ø, Denmark
tel: + 45 39 17 17 17
fax: + 45 39 17 18 18
email: [email protected] and
WHO Regional Office
for South-East Asia
World Health House, Indraprastha
Estate
Mahatma Gandhi Road
New Delhi 110002, India
tel: + 91 11 331 7804/7823
fax: + 91 11 332 7972
email: [email protected]
WHO Regional Office
for the Western Pacific
P.O. Box 2932
1099 Manilla, Philippines
tel: + 632 52 88 001
fax: + 632 52 11 036
email: [email protected]
WHO Regional Office for Africa
Cité du Djoué
P.O. Box 06
Brazzaville, Congo
tel: + 1 321 95 39498
fax: + 1 321 95 39501/2
email: [email protected]
WHO Regional Office
for the Americas
525 23rd Street N.W.
Washington, DC 20037, USA
tel: + 1 202 974 3000
fax: + 1 202 974 3663
email: [email protected]
WHO Regional Office
for the Eastern Mediterranean
WHO Post Office
Abdul Razzak Al Sanhouri Street
Nasr City, Cairo 11371, Egypt
tel: + 202 670 25 35
fax: + 202 670 24 92/94
email: [email protected]
The Campaign Secretariat would like to thank the following organisations, institutions
and private donors for their support to the Global Campaign against Epilepsy:
“Out of the Shadows”, which is carried out by the International League against
Epilepsy, the International Bureau for Epilepsy and the World Health Organisation:
EPICADEC
IBE/ILAE Chapters, Friends and Commissions
Sanofi-Synthélabo
UCB Pharma
and all others who have contributed to its success.
© 2003 ILAE/IBE/WHO Global Campaign against Epilepsy. All rights reserved.
Requests for permission to reproduce or translate this publication should be
addressed to:
GCAE Secretariat, c/o International Bureau for Epilepsy
Achterweg 5
2103 SW Heemstede
The Netherlands
Graphic design: Tushita Graphic Vision, Valérie Rossier, Tushita Bosonet, Geneva.